Hello Teal Sisters! Just 2 quick questions to see if anyone has had experience with Lynparza. I have Ovarian 3C and had a complete debulking surgery in December of 2017. Sadly I am still having abdominal pain. It feels like my ovaries are still there, especially my left one and is sharp. I pray this is from scar tissue. It does come and go and my CA125 has been holding at 14 for the last 3 months. My last CT scan was clear with only one 2.2 CM tumor left. My doctor wants me to start Lynparza but am finally now getting back to work and also dealing with my very ill 87 year old mother. Besides the pain, I am feeling pretty good and am worried about the side effects with this drug. Right now I just can't be sick and down again so I have held off. Has anyone else had side effects with Lynparza and/or abdominal pain even after 15 months post surgery?
Thanks in advance for any responses and may God bless you all!
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Cyndyc
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Hi well I had my surgery last October and still experience some pain from time to time especially if I’ve been doing a lot so I’m assuming I’m still healing or it’s something inside. I’ve been on Oliparib/ Lynparza for just over a month and right now I feel fine! I had a week of feeling sick which wasn’t pleasant and then one day, I felt fine and I’ve not been sick since. The nurse said this is often the case once your body gets used to it. I have some fatigue but I honestly don’t know how much is the drug and how much is the after effects of major surgery and chemo. I’ve been running around as usual so the fatigue is manageable...I just sleep longer at night or I’m nodding off in the evening but nothing I can’t handle. Everyone’s different I know but I was relieved that the side effects have not proved to be an issue and the drug has had fantastic results but it might be worth giving it a try. They did tweak my dose down after the first week but that was because of my kidney function - a legacy of chemo. Clare x
Thanks so much for your response Clare! I have heard of these symptoms, especially fatigue and bowel issues. I am leaning towards trying it.. but have worked so hard to get my energy back have been worried about it until my body gets used to it. Best wishes to you!
Thank you - yes I totally get that and it feels ominous starting a new drug but for me it’s perfectly do-able so I hope if you give it a go it’s the same for you. Good luck XX
Hi Cyndy. I have been trialling Lynparza,or Olaparib to give it its other
name, since January 2014, very tolerable, working full time. Few side effects, dizziness, nausea now and again which is controlled by meds when required and some loose bowel issues which can be affected by what I eat, ie I love onions but they can trigger a problem, same as tomatoes. If yr asking me whether to give it a go Id say yes. if you have any more questions please feel free to ask. xx Kathy xx
You will get much good advice here from ladies taking Lynparza, also known as the PARP inhibitor Olaparib, but one thing I can advise us GO FOR IT!
Olaparib is the best of these and you are very lucky to be offered it.
It can totally keep your cancer at bay and the side effect are usually tolerable.
It is a maintenance drug, so you should be able to live pretty normally. It should not give you joint or bone pain and you do not lose your hair. It will give you some nausea, so you need to have your Cyclizine or whatever works, handy.
The most problematic effect is bone marrow suppression, but your team will stay on top of this, hopefully managing the dosage so that you can keep healthy.
I wish I had some advice about your pain.
Would it be possible to complain enough about this to get a PET Scan? A CT scan might not show what this problem is.
Thank you Laurs! Yes I have been worried about taking it because my dad died of leukemia and have read that it could possibly promote it. And the side effects too after now feeling almost normal except for the pain. I agree a PET scan would be great but its very hard to get the insurance to cover it. I have heard of phantom pain and hoping this is what it is. I am considering the Olaparib more and more and thanks again for your comments. I also had a double bowel resection so was worried about my bowels as it's so hard to control them as it is. Very nice to hear from you and God Bless!
Just to say I have a stoma ( no large bowel ) and had a resection on my small bowel too so I’m very vulnerable to bowel issues but I haven’t had any on Oliparib.
That is so good to know as I struggle so badly with my bowels and even after a year... I am just now to the point where I can go somewhere without having to run to the ladies room every 30 minutes! Thanks so much! xoxo
HI- YES, I HAD DEBULKING SURGERY FOR OVARIAN 3C IN 2016 AND STILL GET VERY SHARP PAINS IN LOWER LEFT PELVIC AREA. SURGEON SAYS IT IS SCAR TISSUE. WISHING YOU THE BEST. TRY TO GET STARTED ON THE LYNPARZA. YOU MIGHT NOT HAVE ANY BAD SIDE EFFECTS.
HI- JUST SAW YOUR 10 MONTH OLD POST AND HAVEN'T FOUND MORE RECENT ONES. HOW ARE YOU DOING? STILL ON LYNPARZA? I WANTED YOU TO KNOW THAT MY FIRST SURGERY WAS 2/16, THEN 4/19 (MINOR). I NEVER STOPPED HAVING "PAIN"
IN THE LEFT LOWER QUADRANT. I'M TOLD IT IS SCAR TISSUE. ARE YOU ALSO BRCA
POSITIVE? I HOPE YOU HAVE CONTINUED TO DO WELL AND IF YOU CAN WALK 3 MILES A DAY, YOU'RE DOING BETTER THAN MOST ON IT. THE DOCTOR KEEPS TELLING ME THAT LYNPARZA IS LIKE GOLD. THE BEST THING THEY HAVE NOW AND SO I KEEP TAKING IT. I'M IN THE US AND LYNPARZA IS NOT A TRIAL DRUG. ARE YOU ON A TRIAL? LET ME KNOW HOW YOU'RE DOING.
I was afraid to start Lynparza too--so many things to consider with their warnings. We are all different and I joined a Facebook PARP group and found the variation in side effects was so extreme--like chemo--some affected so badly they want to come off then others like Kathy--and me--where the side effects are very manageable and life goes on pretty normally. I would say the main side effect for me was joint pain and mild fatigue which I fought by working out daily. That actually helped a lot. The joint pain got bad at times--but considering how much better it was than chemo, it didn't seem to be any reason to stop. I am glad I stayed on it and would have continued if it kept working! Wishing you luck and as long a time on it as possible. Go for it! oxoxox
Just seen your post...yes lots of side effects hair loss and depression on my case my doctor said because of the Lynparza medication..trying to find out how healthier I can eat to avoid all the side effects...hope you are doing ok...so is your mom.
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